Friday, September 25, 2015

Denial on Trial, (Originally written for the Northwest Parkinson's Disease Foundation)

ICYMI here is a post from my series written for the NWPF (BTW, They are streaming their annual Hope conference this year, so you can see it on your computer! Interested? You may register here)

Denial on Trial

By the time we reach adulthood, most of us have learned at least a smattering of discretion. We have our private thoughts, and recognize the wisdom of keeping them to ourselves. This helps us avoid scenes like the following...

Hey, you... Yes, carefree healthy guy, you. You can’t hear me? Well focus and listen up, ‘cause I know something you obviously don’t. Of course I’m shaking. Of course I’m slurring my words. I may lurch and even fall, but no, I’m not drunk. And besides, we’re not talking about me, we’re talking about you.

You think you’ll always have a steady hand and that resonant airhorn of a voice? you think you’ll always have the luxury of gliding across a room without fits and starts, no  hitch in your unconsciously proud stride?  You think walking is simple magic, of which you will always be the master? Maybe.

I wouldn’t bet on it.

You think you’ll always have your power of concentration? Your ability to slide easily between complicated tasks? Well concentrate on this. You may be right. But what if you’re wrong? And I’m here to tell you that people are wrong about this kind of thing all the time. Who for instance? Well, me. But this is about you, not me.

Here is what I’ll bet on.

I’ll bet that before you know it, it will be too late. That you, or a loved one, or a total stranger will make a bad decision at a critical moment that changes your life forever. Or that something out of anyone’s control will cross your stars. It may have already happened and you just haven’t heard. Yet. All it takes is a forgotten turn signal, a twist in a fall, an overlooked bite from an infected insect.

You know this, but you need a reminder. Something to make it real.  

People with Parkinson’s who refuse to acknowledge their disease are said to be in denial. We’re told helpfully we need to get through that, and move on to dealing with the disease. But what about all you other people out there who are borrowing time and only temporarily able? How deep is your denial about the vulnerability of your health?

So look at me. See this peck of pills I take every day just to approximate your supernatural ability to defy gravity and stand erect? See the time I spend wrestling with Newton’s laws, an object at rest, tending to remain at rest, while you go  jaywalking obliviously through the loopholes?

I don’t want pity, I’m doing alright, considering. And I’m not trying to tell you what to do, or eat, how much to exercise, how much to sleep, or that if you have your health you have everything. I’m not saying live life’s every minute to the fullest before it’s too late, that you don’t know what you’ve got until it’s gone, or any other bit of cliched good advice that we all know and have heard ad nauseum.

Like I said, (and yes, I “protest too much,”) it’s not about me. It’s about you. I just hope you learn from my experience, acknowledge the facts, appreciate what you have and and then live according to whatever seems to you best in light of reality. To live as though these things matter.

Why should I care if you realize that this is important? This Parkinson’s of mine must be good for something. If that thing is spurring you to realize how vulnerable we all are, that’s way better than nothing.

Friday, September 11, 2015

Book News, Advance Copies of "My Degeneration" Surface

It's almost here! The first advance copies of my book chronicling my effort to deal with Young Onset Parkinson arrived yesterday at my publisher's office at Penn State University. Below, is a photo giving a bit of the flavor of the book. It should be available in early November. Information on ordering here

Tuesday, September 1, 2015

Parkinson's Activities for the month of September in the Anchorage Area

With Winter on its way we need distraction from dwelling on the coming cold and dark! What better distraction could there be than Parkinson's Disease? The diversion kicks off Monday, September 14 at 1:00 pm. with a telehealth interactive broadcast. The subject will be "The benefits of Tai Chi for everyone" taught by Kaiya Treffry - Instructor for ACT 2. To find the Alaska meeting proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. ( Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right.
As for our regular support group meeting, the magic eight ball says it's on for Saturday the 19th of September, but details beyond that are hazy. The Northwest chapter of the American Parkinson's Disease Association had been talking about staging a small conference for us on that day, but I haven't heard from them for awhile. Details as they emerge from the inky depths of the eight ball. To be continued...

This just in from the eight ball, it turns out that I weill have to miss this meeting, as I will be up in Denali Park, driving the road with a lottery winner. I encourage people to meet anyway and discuss their PD concerns with one another.